Working Groups for the future development of cross-centre cohort studies

The EU Joint Programme Neurodegenerative Disease Research (JPND) has released the results of a “rapid action” call to support ten groups of leading scientists in finding ways to enhance the use of longitudinal cohort studies for neurodegenerative disease (ND) research. This call aims to support motivated groups to come together to provide advice to the JPND community on how to address the most pressing issues that are preventing the full exploitation of longitudinal cohorts for ND research.

JPND launched on 23rd of April 2014 this “rapid action” call as part of a series of new JPND initiatives, designed to enhance the impact of research by aligning and building upon existing national programmes and initiatives, and to bring together different research areas and disciplines to concentrate efforts on neurodegenerative diseases. “Longitudinal cohorts are a great first area for JPND to focus on, as they are tremendously important resources for multi-disciplinary research, in particular for research into the causes of diseases as well as creating a platform for intervention studies.”, states Professor Philippe Amouyel from the JPND Management Board Chair in an interview about the latest JPND call.

As identified in the recently published report of the JPND ‘Action Group on Longitudinal Cohort studies in ND research’, a number of methodological challenges remain if current population- and disease-based cohorts are to be fully exploited for ND research. JPND has decided that these issues can be progressed most effectively through assembling motivated groups of leading experts in the ND field. Accordingly community-led Working Groups are to be supported that can push forward the conceptualization of such topics in order to provide guidelines and/or best practice frameworks of value to the wider research community.

The awarded proposals are for top ND scientists to come together and recommend how to address the most pressing issues that prevent full use of longitudinal cohorts. This includes population studies and disease cohorts, both having considerable potential for ND research. Funding decisions were based upon scientific evaluation and recommendations to the ten sponsor countries by a JPND Peer Review Panel.

Awards cover a wide ND landscape (Alzheimer’s, Parkinson’s, ALS, Lewy-body and vascular dementia) and different groups will address methodological challenges for studies in a number of areas, including cognition/functional assessment, biomarkers and biobanking, imaging, health and social outcomes and presymptomatic ND.

“The plan is that each group will push forward the conceptualization of a key challenge and derive valuable guidelines and/or best practice frameworks for the wider research community” , commented Dr. Rob Buckle, Director of Science Programmes at the UK Medical Research Council, the organisation which facilitated the call process.

According to Professor Philippe Amouyel, Chair of the JPND Management Board “this is an excellent outcome for JPND and a significant opportunity to advance the field. A rapid and flexible JPND process is now established to achieve JPND strategic goals, here to promote harmonisation of approaches and data sharing. These outputs will accelerate the progress of future studies by the global ND community”.

Each Working Group is expected to run for a maximum of 6 months, reporting back to JPND by Q1 2015. Looking to the future, and drawing on advice emerging from the Working Groups. JPND is likely to launch a follow-up call for full scientific applications on longitudinal cohort studies, to be received next year.

Read more about this call on the JPND website

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